Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 In a message dated 8/1/00 6:55:32 PM Pacific Daylight Time, becky@... writes: << I'm having twinges of guilt about " messing with God's design " - >> Becky, I would not say you are messing but helping to perfect it. God's little slip of the mold would cause a great deal of problems down the road if she needs treatment and it's not provided. There for a while many of the kids in the group were experiencing chronic ear infections possibly caused by e tubes that are out of whack, there may also be misaligned jaws and ears which would create problems if glasses were ever need. I don't intend to scare you in any way. These are just some of the problems that we have come across. Belinda(Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 you want to all meet in the chat room? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Becky: I understand your " messing with God's design " thought. I have a unique situation in that we have identical twin boys and only one has plagio. He was on the bottom in utero and had other complications that created a tight neck muscle and so he had a pretty mangled head and misaligned ears. Both boys had a really rough start - born 2 1/2 months early, but the plagio is the only lasting problem (we thank God every day!). They are 11 1/2 months old. Repositioning didn't work, so we looked into treatment options at 7 1/2 months. We got so many negative comments about bands/helmets from family members and our ped. Basically, many people thought we should be happy that was alive/healthy and to expect a funny shaped head because he was a preemie. I didn't accept that once I knew treatment was available. Although got this crooked skull out of a terrible situation, I don't believe God would want him to stay that way. There are lots of teeth that come in crooked and we quickly put braces on them for cosmetic and health related issues. This is no different. As far as telling what the head should look like from the x-ray, I don't think that is possible. We have seem tremendous progress in 's head from wearing the DOC band and it looks more and more like 's head every day. does have a minor flat spot high on the back of his head, and it appears that may end up with that same spot. Maybe that spot was God's work, but I don't believe the really crooked heads are. Hope this helps...congratulations to you for finding out about this when your daughter is only 3 months old!!! That is wonderful and you should certainly feel proud about it. Have you tried repositioning her head? With her being so young and not moving much it can be valuable. As far as what questions to ask...there was a great list put together a while ago...I will look for it. Ask more questions...this group is great. Sue ----- Original Message ----- From: Becky Keck <becky@...> <Plagiocephalyegroups> Sent: Tuesday, August 01, 2000 9:54 PM Subject: First appt. > > My 3-month old daughter, , has her first evaluation appt. on > Thursday. Can someone please clue me in on what specific questions I > should ask? > > Also, if she's given a helmet/band, will the helmet/band make her head > be the shape God intended it to be, or will it be an " artificial " > shape? Does that make any sense? I guess what I'm asking is, can they > tell from the x-rays how it's SUPPOSED to look? I'm having twinges of > guilt about " messing with God's design " - I don't know where those > feelings are coming from, but they're really bothering me. I guess I > just really don't have peace about all this stuff. I'm on the brink of > tears most of the time...PLEASE, PLEASE, someone, give me some words of > wisdom..... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Becky: Think of this as God's little "life lesson" for you, and be thankful he didn't choose you for something more severe. Kendra bgles2@... wrote: In a message dated 8/1/00 6:55:32 PM Pacific Daylight Time, becky@... writes: << I'm having twinges of guilt about "messing with God's design" - >> Becky, I would not say you are messing but helping to perfect it. God's little slip of the mold would cause a great deal of problems down the road if she needs treatment and it's not provided. There for a while many of the kids in the group were experiencing chronic ear infections possibly caused by e tubes that are out of whack, there may also be misaligned jaws and ears which would create problems if glasses were ever need. I don't intend to scare you in any way. These are just some of the problems that we have come across. Belinda(Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 I was just thinking of setting up a chat today!! Now is great for me.... I'm on my way.... kendra mesocat@... wrote: you want to all meet in the chat room? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 I'm on the brink of >tears most of the time...PLEASE, PLEASE, someone, give me some words of >wisdom..... > Becky, try to hang in there! I know it is so hard to be where you are right now - we all understand. It is truly wonderful that you have recognized the plagio so early in 's life. That will definitely help her! Try to take a little comfort in that fact. When all of this first started happening to our family, I cried all the time. I have to say that this group has really helped me. Even though I don't post a lot of messages, I read them all and somehow, it just makes me feel better, knowing others are experiencing what I am and that everything turns out okay. I agree with Sue (I think it was Sue who said this!). I don't believe we are messing with God's design, I think we are improving on it! I think that pursuing treatment for is the best thing you can do. Obviously, most of us in the group are very pro-band/helmet but if you decide that isn't what you want,we will respect your decision. We will support you however we can! I don't know what kind of doctor you are seeing for 's appointment tomorrow but ask any questions that come to mind! No question is stupid when it comes to your child!!! If you are not seeing a specialist (craniofacial or plastic surgeon), you might want to try to get a referral. If x-rays or a cat scan are not suggested, you might want to ask for that. Plagio is often diagnosed by sight and feeling the head, but x-rays/cat scan can help rule out other, more serious conditions like craniosynostosis. My biggest piece of advice to you or anyone else new to this group is.......be persistent! As many of us can tell you, it took a lot of doctors appointments and nagging on our parts to get doctors to listen to us! No one knows your child better than you do and you need to go with your gut feelings about her! Good luck to you. Let us know what happens tomorrow. You are a good mommy. Sharon *********************************************************** Sharon Rice Program Coordinator Office of the VP for Academic Affairs The College of Wooster Wooster, OH 44691 (330) 263-2576 - phone (330) 263-2072 - fax srice@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Becky it is great that you are catching this so soon. The best advice I can also give is follow your motherly instincts, and be persistent in any avenue that you choose. Review the messages in this e-group it is very educational. Have someone else with you at the appt. the more people who hear what Dr's have to say the better it is to comprehend. It sounds to me you are following your heart and that is always good. I've been dealing with this for 3 weeks now and it is very very emotional and that is because you love so much and you are doing what is best for her. Making sure you don't leave anything unanswered. Best of luck to you and and keep us posted we will all help in any way possible. (Gunner's Mommy) > > My 3-month old daughter, , has her first evaluation appt. on > Thursday. Can someone please clue me in on what specific questions I > should ask? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Becky: It is VERY good advice to take someone with you! Also take a pen and paper. All the answers will just jump out of your head and make a b-line for the door! Good luck today! KEndra Polencheck wrote: Becky it is great that you are catching this so soon. The best advice I can also give is follow your motherly instincts, and be persistent in any avenue that you choose. Review the messages in this e-group it is very educational. Have someone else with you at the appt. the more people who hear what Dr's have to say the better it is to comprehend. It sounds to me you are following your heart and that is always good. I've been dealing with this for 3 weeks now and it is very very emotional and that is because you love so much and you are doing what is best for her. Making sure you don't leave anything unanswered. Best of luck to you and and keep us posted we will all help in any way possible. (Gunner's Mommy) > > My 3-month old daughter, , has her first evaluation appt. on > Thursday. Can someone please clue me in on what specific questions I > should ask? > Quote Link to comment Share on other sites More sharing options...
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